Refusal to go to any kind of DR./No Dementia diagnosis

terriloulou · October 16

My mom has had dementia for probably 10 years..ony now getting to late middle stage. She is completely uncooperative with doing anything involving Dr.s (even the dentist) . She throws an absolute fit, and my Dad refuses to just take her anyway.

As a result, we have not been able to get her diagnosed, although it's obvious she is in middle/advanced stages. Paranoia, distrust, panic, depression, she even has hallucinations that there are people robbing the house, and my 91 year old father is drugging her, selling drugs and giving drug parties late at night (absolutely beyond ridiculous) .

She is unable to make any decisions involving her care or her life. I worry that if something happens to my Dad, she would be unable to make any decisions. I am their medical power of attorney, but do I need to do more? My Dad I think is reluctant to have her declared unfit although she clearly is. . She doesn't even realize what season we are in, and thinks my Dad rents a room from her in their house. I live in Texas and they are in WA state. I try to go visit when I can, but I am still working. I have a greatly reduced work schedule, but I can't retire yet.

M1 · October 16

welcome to the forum. This sounds like an accident waiting to happen. Are you their financial POA also? Sounds like you need to hire a care manager locally to oversee their care. Or move them nearer to you. But you will need general durable POA to do that.

terriloulou · October 16

How do I find a local care manager. We have tried Visiting Angels, and Care.com, but my mom hates and distrusts all strangers. Dad refuses to move her away from her home..even to a care facility. He thinks it will exacerbate her condition.. I tend to agree.

SusanB-dil · October 16

Does she have any medical doctor at all? Sometimes it may work if you tell a person that they must go for insurance reasons. ("Insurance requires a visit") Tell the doctor in advance what is happening. It does sound like some meds might dial some of that behavior down. Is there any reason your dad will absolutely not take her anyway? It may actually benefit him to get some help for her.

So sorry you are dealing with 'this'.

mabelgirl · October 16

you might want to start with adult protective services because it certainly seems like an environment conducive to a bad ending. They may be a quicker route to get things situated so at least mom and dad are safe.

terriloulou · October 16

I think Dad finds it easier to just not fight with her (Dr Visits) than to try to force her to go. It turns into a battle. Thanks for being supportive!!

H1235 · October 17

I would look into DPOA for both of them if that has not been done. I think you will need it. Is your dad still driving at 91? How is he managing all this? Many half his age burn out from the stress and mental exhaustion. Does he take her with him to the store or leave her alone? I would look at their home and living situation very critically during your next visit. Get nosy, snoop around a bit. Are bills being paid, is there expired food in the frig, is there plenty of food, burnt kitchen towels? Could he get her and himself out of the house if there was a fire? As you said what happens to your mom if your dad passes. Would she be able to call you or someone for help? She would be in the home alone until someone figured out something was wrong(that would not be good). If he doesn’t want to argue with her about going to the doctor what about other things? Does he let her go up and down stairs ( even if she is unsteady on her feet), does he let her fix meal (is that a good idea? How close does he watch her?). A PWD often dislikes showering. Is that an issue? How does he handle it? Incontinence is another common and difficult issue. How is she managing? Does she need help or allow him to help? I’m not judging your dad, I can picture my dad being the same way with mom if he were still alive. Its hard to really understand the role of caregiver( something all of us struggle with), but even more difficult at 91.Good luck.

harshedbuzz · October 17

I am so sorry you are dealing with all this. It is a hair-on-fire level situation.

Given the distance, your responsibilities, their ages, dad's reluctance/inability to act and the stage/nature of mom's presentation it's a matter of time before things go sideways.

At the very least, I would have a Plan B in place for your mom in the event that your dad is among the 1/3 of caregivers who dies before their PWD.

Are you an actual or de facto only child? Are there other local-to-them family members who could be your eyes and ears? Is dad OK— his choices seem to hint at cognitive impairment or depression. A care manager could be of use to you, but they're not free and might make dad feel spied on.

APS involvement could be a nuclear option in your situation. A professional could assess their home and dad's ability to care appropriately for your mom. If it's flagged, that information would presumably help you take next steps but would likely destroy your relationship.

To act, you will need both a medical POA and a financial one in order to look out for their interests. If you can't get that, you may need to obtain guardianship to protect them both. My aunt and a friend had to do this in order to protect their LOs but the situation was a bit different as the PWD was not married.

One concern I have in this scenario is what happens if dad has a medical emergency? If he's home, your mom might not recognize it or even be able to respond appropriately to obtain help. This happened with my parents— caregiver mom became very ill, and dad did not behave appropriately. I called them daily and he lied to me about her whereabouts telling me she was napping, shopping or at the pool which were all plausible. Once I called for a well-check and he told police a similar story. A friend saw mom and rushed her to the hospital which called me as an emergency contact 2 days later when it became obvious to them dad was impaired.

Another concern is that should dad have a car accident or medical event away from home, your mom could be left alone for some time. At the very least, they should both wear Medical Alert bracelets to inform first responders of dad's role as dementia-caregiver and mom's dementia.

HB

terriloulou · October 17

https://alzconnected.org/discussion/comment/225787#Comment_225787

Thanks so much for all these insights. He is actually pretty remarkable for age 91. He manages, but those days are coming where he won't be able to do that anymore (driving, etc) Luckily they live in a small town. I visit once a month or so.

terriloulou · October 17

Thanks for all of this. We have been looking into the medical care bracelets.

fesk · October 17

I don't think I saw it answered. You can search for a geriatric care manager at this site:

https://www.aginglifecare.org/

I recommend picking a few and interviewing them so you can see how they can help you. A care manager will organize the support you need. It's not the same as hiring an aide/caregiver from an agency.

terriloulou · October 17

https://alzconnected.org/discussion/comment/225809#Comment_225809

thank you !

housefinch · October 17

My family used an aging care manager who was invaluable. She was an RN and had a social worker at her office, plus an attorney. She knew all the local AL/MC/CCRC facilities, their management, quality, etc. She was able to advise my family what level of care our PWD needed and during a hospitalization even got a 2nd opinion from another doctor. I don’t know the cost, but my mom said it was well worth it.

terriloulou · October 17

Thank you all so much about the Elder Care Manager . I’m searching for one now . That sounds like exactly what we need .

Refusal to go to any kind of DR./No Dementia diagnosis

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